Photos: Kas & Bump; Kas, Ish and Amy in Glasgow's George Square; Matt & Ish; My Backyard still light at 11pm...
Let the count down begin. As I slowly gain my strength and get over the Pneumonia, my hospital visits have remained at a weekly frequency. It’s a big difference to the monthly freedom I enjoying last year whilst I was munching Gleevec. Hopefully as I progress and get myself back to full force, I will be extending my visits to the new Beatson Oncology Centre in the West End from weekly, to fortnightly and then back to twelve trips a year. But before I get ahead of myself, my attention needs to remain fully on Desatinib. I’ve just been told that I have six months for this treatment to work…if it doesn’t, chances are we’ll be heading down the transplant route…
The change over from Gleevec to Desatinib was about six weeks ago…because of the Pneumonia, I had to stop my meds for a week in hospital. The time restarted because of that – that means I’m about 2 ½ weeks into the new treatment. At the 3 month point, a PCR will be done to determine how well I’m getting on and at 6 months, the CML will have needed to drop from the current 2% to 0.2%. My consultant is quite confident of this, as am I, due to the fact I reacted quite well to my old meds and I don’t have a mutation (in the bloods that is…not me turning into a zombie). So, it’s now back to me concentrating on getting my old fitness levels topped up and munching anything that doesn’t resemble hospital food. I’m sure the fitness part will take a few more weeks as even a trip to the shops manages to knock me around a bit. And that’s one of the big factors that got me back to work so quick…I feel knackered just milling about at home and am desperate to get outside. Not sure if it was the side effects from hospital or just the dodgy day time telly and a rained out Wimbledon?
Kas is still doing really well…she’s just moved into her third trimester (I’m going to have loads of boring parent chat soon) and the bump seems to get bigger by the day. We’re still trying desperately to maintain a half decent social life when the baby arrives – we have the annual Anthony Nolan Ball coming up in November that we feel we must attend and then I’ve also been asked to be a speaker at this year’s CML Conference that is being held in Edinburgh. I may even be able to incorporate our new arrival into my time slot. We’ve also got my mate Jason and Jen’s wedding to attend (even though it’s on the same day that Kas is due) and I can’t forget to add in his Stag Do or “Festival” as it’s been tagged, that month as well. I may even fit in the Leukaemia Research Cycle from Glasgow to Edinburgh as well...
And it’s also time to farewell our friends Ish and Amy from the sunny shores of the UK. It’s so good having Aussie mates living in Britain…it makes you feel more at home and it also gives to someone to talk to when it doesn’t stop raining for 400 days straight. They’ll be missed but I’m sure they’ll make a good life in Kuwait where Amy has secured a very good teaching position. They were up in Glasgow on the weekend for their farewell and it was fun getting out and about in the city centre and attending a very Aussie BBQ from some Scottish mates Colin & Lorna. The BBQ was also a chance for them to give us all the news that Karen’s good friend Lorna is pregnant – we’re both very happy for them…she’s due only three months after us which will be brilliant!
It was also very funny to run into an old Aussie mate that has just moved here. It’s a very small world we live in!
My doc has just emailed to say that I’m not required to see them this week and that I can come back next week – it’s already looking good…back to fortnightly visits already! My blood tests, including Liver and Kidney function tests were all “A-OK”. In the words of Borat…very niiiice!
So then, it’s now a visit next week to the docs…I’ve also been asked to sign a form where the Transplant team are hoping to conduct another world wide donor search for me. This will be happening in a few weeks time – I’ve already been found a 10/10 donor match a year ago, but in case they are no longer listed or they can find a “better and younger” match, they are hoping to do another search. If anyone hasn’t yet joined up the Bone Marrow donor list yet, to me, this seems like a pretty good time. Remember, all that is required is a simple blood test…from the vein and not your bone. Check out the Bone Marrow Registry links on the right of the screen if you’re keen to help me out (and thousands of others!)…
http://www.anthonynolan.org.uk/
Thanks for the messages and emails…wish me luck for my annual work review meeting on Wednesday.
HAPPY 1ST BIRTHDAY TO MY WEE NEPHEW HAYDEN – LOVE YA MATE!
4 comments:
Hi Matt
Hope you are recovering nicely. Looking forward to meeting you in Edinburgh. I hear we are sharing a presentation .... so we'll be talking loads before then ! Let me know how you are doing and good luck to Kas with her pregnancy, my daughter is expecting for beginning of September.
Take Care
Elizabeth
www.cmlsupport.org.uk
Elizabeth Rees erees@hotmail.com
United Kingdom
Hay Matty and Kas!
Wow Kas, the baby bump certainly has grown! Not long now. Good luck keeping the "normal social life" going when the new one arrives, I think you guys were struggling to see each other as it was! ;) Keep well and look after yourselves.
Lots love ffom Nick, Claire and wee Hayden!
Hi Matt
Really pleased to see you are already back to fortnightly reviews. Fingers crossed that the Dasatinib works for you.
I am sure that your energy levels will return, don't push yourself too hard.
Wishing you all the best
Parmjit & Maxie
Parmjit Horwood
Matt,
Just a short note to wish you well with your treatment. Keep blogging!!! It's very interesting to watch your progress.
I was instrumental in organising an Anthony Nolan donor session in Kirkwall in April 07. We did a fair bit of media pushing and managed to get 120 people out on the night. 96 of those have gone on the register. A fantastic reposnse for such a small place. You never know, but maybe one of those people might be that match you'll possibly need!!!
http://www.orkneytoday.ltd.uk/news_item.asp?newsItem=1508
Been based in Orkney for the last three years as a cop, but hoping to move away in a couple of moths to the Falkland Islands as a Policeman. That should be interesting!
Hope it all goes well with yourself. Keep your chin up. If you ever need a chat, don't hesitate in getting in touch.
Kind regards
Donald Morrison
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